Blunted Villi

[Anonymous]

A few months ago our Pedi did some lab work on our LO…she did the IGA and TTG, celiac panel. He was having a lot of diarrhea, then vomiting, prolonged rash and some eczema, couldn’t wean off of PPI and became lactose intolerant. This all happened after putting him on all table foods.
The panel came back normal but the IGA was low. Also, he was not on gluten because I suspected him having a problem with wheat…the nurse didn;t tell me he needed to be eating it. But with the IGA being low, we went to a GI…we put him on gluten for 30 day, in which he did very good… he had the scope….the GI said the villi was damaged and there was some polyps forming and it looked like celiac to her, but the pathology report couldn’t confirm that. So she sent us to an immunologist…he test for delayed gluten reaction, it was negative…he has no allergies at all, he also retested his IGa this time it was normal, his IGG is a little low but he believes it’s transient. he is also not gaining weight, he has fallen off of the growth charts.

So, what would you make of that? The immunologist is sending us back to the GI and he is wondering if the Villi is damaged because he was so sick for 3 months…he was getting one stomach virus after another. This sucks becasue he is 16 months old now and we have been trying to figure out what happened for 6 months now. We don’t jknow if it is Celiac or what. he is on a gluten free diet but nothing has changed for him. Still acts the same, feels the same etc. Just not gaining any weight. He is off of the PPI now…

He is also an adopted embryo and there is no known family history. None of the immediate family on the donor side has any food allergies or problems.

[Anonymous]

Ttg tests are not the most accurate in a child under 3 years old. for some reason, they don’t always produce Ttg antibodies at that age. also, if the original test had low IgA, the Ttg IgA would not necessarily be accurate–how low was his IgA?

when we were testing our kids for celiac, one of my kids is IgA deficient, not just low, so the TtG test was totally useless. since we had 3 other children with positive Ttg tests, we had to have my son tested with IgG testing and we also did genetic testing to see if he carried one of the main genes for celiac–which he does.

we were fortunate, and we were able to get in on a celiac study being done through the university of california,irvine. they did celiac testing and genetic testing on all of us—it would have cost us a fortune if we had had to pay for it ourselves. we now know that kevin and i and 8 of my 9 kids all carry one of the main genes for celiac—but we don’t know why the disease only activated in the 3 girls. i periodically have a Ttg test run when i am having other blood work done just to be sure it hasn’t activated in me—i should probably be testing my whole family once a year–or sooner if they should start to show any symptoms—but, one of my daughters that is confirmed celiac did not have any symptoms. it’s a tricky thing to diagnose sometimes.

i had a scope last year that showed blunted villi in the duodenal bulb and they wanted to diagnose me with celiac, but i had a Ttg test done that was clear. Ttg rises with celiac damage. i also happenned to read that taking alot of NSAIDs can cause similar damage in the duodenum bulb. i was taking alot of them at the time.

this year i had a scope again—-and there was no damage, but i had developed eosinophils. so, i know i don’t have celiac, but i may have developed eosinophilic esophagitis—and the allergist tells me that the usual culprit for it is a food allergy—-usually wheat.

the GI really can’t tell anything just by looking at the scope—it is the pathology report that is the most important because they are looking at things at a microscopic level. also, polyps don’t have anything to do with celiac.

the constant stomach viruses could have caused the lactose intolerance—-celiac can also cause lactose intolerance—but both conditions would only cause temporary lactose intolerance and once the intestines heal, the lactose intolerance should go away.

how long have you had him gluten free now?

this is just my personal feeling, but if being gluten free is not making any difference in how he feels or acts and you did not get a positive pathology report saying it is celiac, i think i would go ahead and put him back on gluten for at least 3 months or longer, keep notes on how he seems to react to various foods, and then have the testing redone when he gets a little older. sometimes they need to be on gluten for awhile before the damage shows up. but, they can also have a positive Ttg test and not have damage show because celiac can be patchy–also, the scope can only reach about 6 feet into a 22 foot long small intestine.

my twins did not show damage on their scopes, well, tianna showed one area of increased itraepithelial lymphocytes, but nothing else. however, when both twins and molly all had positive blood work, it was kind of a no-brainer, and so the doc told me to put them all gluten free and he didn’t even bother to scope molly. molly had no symptoms of celiac except for the fact that she was very thin—-but all of my kids were small and thin.

at first we tested the girls every 6 months (Ttg levels) to see how well they were following the diet. molly’s numbers have always been good, but the twins are usually a little elevated because they will cheat on their diet. but, it does confirm to us that they definitely have celiac since their Ttg levels will rise and fall depending on how well they are following the diet.

it sounds like it could be a real possibility that your son could have celiac disease, but it also sounds like his problems could be caused by a weak immune system that seems to be getting better.

you kind of have a tough call to make here. i don’t know if my story was of any help, but i would hate to see you have to go totally gluten free if you really didn’t need to. it really isn’t that hard to do, but it can be inconvenient—-especially when you are away from home.

keep me informed on what is happening—i will be interested to see how things unfold for you.

my youngest was failure to thrive for two years. first, it was from severe reflux, but after she had a fundo/hiatal hernia repair, she still didn’t gain weight. then she developed esophageal thrush and would refuse to eat—escept to nurse. we got that cleared up and she gained weight, started sleeping and started eating—only to get sick and then develope obstructive sleep apnea—which can cause failure to thrive, also. she had her tonsils and adenoids removed when she was two and has hardly seen a doctor since. she is still a small child–but that seems to be the norm for our family.

[Anonymous]

I just got your reply. Sorry it took so long. Our LO got tubes put in then we went out of town.

When his IGA was low…it was a 1….it is now normal…no longer low.
Only his IGG is mildly low and the allergist believes it is transient…he thinks his immune system didn’t kick in on it’s own…therefore it led to all of the viruses, which could have led to the blunted villi.

Interesting you said something about NSAIDS causing this because he was on motrin for several months because he was running so many fevers etc.

He has been gluten free since Jan 26th. The only thing that has made a any difference in his behavior is getting tubes in his ears….. all of his ear problems started with all the other stuff so for months he has had fluid or ear infections for 3 weeks at a time and was on 3 different antibiotics each time he had one. Ever since he got his tubes he is more happy, not as fatigued and eats even more now. He has gained a pound already..in a week.
What adds to all of this is h is an adopted embryo, but we talk to the donors and there is no family history of Celiac or even food allergies, so it’s useless for any of us to be tested, but they talked to their doctors and they felt there was no reason to test them either. So we are thinking that this is all stemming from the low immunity, antibiotics, virus’s and he was on Zegerid 3 times a day for months before all of this. i read that sometimes the acid production gets so shut down that it allows for bacteria to build up in the intestines, causing viruses and it can blunt the villi.

We go back to the GI April 19th and I plan on bombarding her with all of this! My husband and I are thinking what you suggested…that we will start giving him wheat/gluten again and seeing how it goes. Now that his BM’s are normal, he is no longer on reflux med, we weaned him off 2 weeks ago, his ears are clear and he isn’t taking mortrin anymore…we will be able to tell if gluten is hurting him. before we didn;t really know because so much was going on. I will say that the 30 days he was eating it for his scope..he did fine.

I really do appreciate you telling me your story, it does help….. I also appreciate your opinion…it’s good to chat with someone who has been through this and can give a good opinion.

So if you were us…..would you just go for it based on what I have told you? I really do feel that since his IGA is now normal, the biopsy couldn’t confirm celiac and there is no family history that he doesn’t have celiac.

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